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Madly eating but still losing weight

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Hello, friends.


I am still slowly losing weight, although I have a great appetite. My bodily functions seem normal, too. I started losing weight prior to the diagnosis of systemic sclerosis in February, about 15 pounds. I have lost 10 pounds since January. All of my joints are poking out, hardly any muscle and tissue left. I am going to see my rheumatologist in July, and this will be a topic for discussion.


Any suggestions?



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Hi Honey,


My only suggestion is that I wouldn't necessarily save this topic for just the rheumatologist; I would start dealing with it with my internist, right away. They can help by ruling out common causes and even by doing some preliminary tests that might help the rheumatologist, instead of starting from scratch then.


Also, they might be able to refer you to a nutritionist, to make sure you are getting adequate nutrition. If you are having malabsorption, which is common in scleroderma, you may need to increase your calories to offset it. Sometimes that is done by drinking a meal replacement, such as Ensure, between meals -- rather than instead of meals, or even using it as a base to make a milk shake (provided you are not milk intolerant).


As I understand it, it is usually easiest to gain weight by drinking the calories, so skip plain water or calorie-free beverages, for the time being, and focus on drinking things that have a lot of calories (like fruit juice, milk, shakes, etc.).


Will you keep us posted on how you do with this? You want to do your best to avoid too much weight loss because then you might be stuck with tubal feeding. So now is the time to take action, marshal your forces, and prevent further weight loss or, with any luck, even gain some weight.

Warm Hugs,


Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099


The most important thing in the world to know about scleroderma is sclero.org.

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Listen to what Shelley said. You shouldn't wait until July. I just went to a nutritionist and you can make awesome shakes using Ensure or other similar products or instant breakfast mixes. Also, protein bars are good if you can tolerate them. Let us know what you find out.

Take care!


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I too am having the same problem. We are running so many test I'm sure thankful I have insurance. I recently have tried adding an energy drink. There is one that each serving has the day's recommended daily dose of most vitamins; 2 servings per can. I haven't talked to my doctor (GP) as to whether that is a good idea or not. It seems to be slowing the weight loss down. Problem is I am diabetic so it is some balancing game. I'm glad you posted this as I was thinking of making a similar one. I did not know that sclero would cause weight loss. I hope you find the way to go. I will be watching for your posts.

I am thankful I am not having an overweight problem.


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Just a quick note for clarification. The brand name Boost has been edited (as are most brand names). In the United States, Boost is the name of a nutritional supplement, whereas in the UK Boost is the name of an energy drink containing Taurine and Caffeine.


Nutritional supplements can be useful in this context of this thread's discussion, but energy drinks which contain stimulants can actually suppress the appetite further. Additionally, they may cause problems with blood pressure and add to reflux issues.


It is best to consult with your own nutritional health advisers.

Warm wishes,



Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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